Living with Systemic Lupus Erythematosus(SLE): A story of resilience
KUALA LUMPUR: Many patients with Systemic Lupus Erythematosus (SLE), an autoimmune disease, experience severe joint pain or extreme fatigue, making it difficult for them to lead an active life including engaging in recreational activities.
Indirectly, this condition also exposes them to potentially unhealthy lifestyles. Living with SLE doesn’t mean the end of one’s active life. It doesn’t stop patients from pursuing an active and enthusiastic life.
Although SLE is an autoimmune disease that can cause fatigue, joint pain, and other health problems, many SLE patients continue to strive for a resilient life.
For Zaimamaria Ab Rahman, 42, who was an active individual, jogging and cycling before being diagnosed with SLE in 2013, life without exercise is like losing a source of joy.
“Actually, I have been diagnosed with mixed connective tissue disease (MCTD - a rare autoimmune disorder) with the primary symptoms being SLE affecting the joints,” she told Bernama.
To stay fit, Zaimamaria continued to do some light exercises like brisk walking, walking, and cycling, depending on her ability and refused to let her illness stop her from staying active.
Zaimamaria is an inspiring story of the struggle of SLE patients to continue practising a vibrant lifestyle despite facing often disappointing health challenges.
Sharing her life story, Zaimamaria said her weight once soared by up to 10 kilogrammes (kg) due to steroid intake after being diagnosed with SLE.
Disturbed by this condition, the former private sector employee tried to find a way to regain her weight by engaging in some strenuous activities such as hiking and running.
“Before getting sick, I did a lot of activities like jogging and cycling. However, after being diagnosed with SLE, I started joining hiking and marathon events in 2014 in the hope that my weight could return to the ideal 55 kg.
‘But, my plans went wrong because after several attempts, I began to feel uncomfortable, almost fainting, and experiencing breathing difficulties. So, not wanting to take any risks, I had to stop doing it,” she shared.
Now, Zaimamaria no longer needs to take steroids, and her weight is also more controlled, proving that SLE is not the end of an active life.
Zaimamaria’s story might have also happened to other SLE patients, but many choose not to share their experiences for several reasons, thereby causing many people to remain ‘vaguely’ aware of the ability of SLE patients to engage in strenuous activities.
According to Assoc Prof Dr Syahrul Sazliyana Shaharir, a rheumatology specialist from the Medicine Department, Faculty of Medicine, Hospital Canselor Tuanku Muhriz, Universiti Kebangsaan Malaysia, before the incident where a teenage girl was struck by a mystery illness while participating in the National Service Training Programme (PLKN) in 2005, not many people in this country knew about SLE.
The teenage girl was found to have severe rash symptoms on her face during her participation in the PLKN, and after being referred to a specialist, she was diagnosed with SLE.
She said SLE, also known as Lupus, is a long-term autoimmune disease, stemming from the production of autoantibodies that mistakenly attack the body’s own tissues.
This condition causes abnormal inflammatory responses and damage to the function of certain tissues and organs such as the skin, heart, joints, kidneys, lungs, nervous system, or other organs in the body.
“Those who suffer from it need to undergo certain tests to find the cause of the disease. However, there are several known triggers that cause SLE, including excessive sun exposure, genetic factors, viral infections, and hormonal imbalances during puberty,” she told Bernama.
She said 90 per cent of those affected by this disease are women, especially those aged 15 to 45 years old.
“There is currently no treatment available that can cure the disease. However, there are medications that can help manage the signs and symptoms such as inflammation caused by SLE,” she noted.
Therefore, she said, patients are advised to adopt a healthy lifestyle such as exercise so they can lead a normal life, but they need to factor in their stamina and ability in addition to adopting a balanced diet.
“What’s important is for patients to discuss and seek advice from their treating doctors before referring them to physiotherapy to assess the strength and stamina of patients.
“This is important so that patients can determine if such strenuous activities are suitable for their health condition,” she said.
Dr Syahrul Sazliyana said this is because “SLE is sometimes inactive, that is, it can be controlled (remission), and sometimes it becomes active (relapse), and if active cells are uncontrolled, it can be fatal.”
Therefore, she said, patients are advised to start such activities albeit a slow pace and gradually increase the intensity or duration of activities based on their body’s capabilities. “While the disease is active, we do not encourage patients to engage in activities such as hiking and camping as there is a risk of infection, but when SLE is inactive, patients can gradually engage in activities and not overexert themselves,” she said.
Given the emphasised healthy lifestyle practice, Dr Syahrul Sazliyana, who is also Deputy President of the Malaysian SLE Association (PSLEM), said the association will also hold its annual event, Walk-APayung 2024, at Laman Indera Kayangan Marina Putrajaya on May 19, in conjunction with World Lupus Day celebrated on May 10 every year.
She said the walking programme using an umbrella for a distance of three kilometres is symbolic awareness for SLE patients who cannot be exposed to sunlight.
“In addition to creating awareness, this event also aims to raise funds to help those who suffer from SLE. We are targeting 500 participants to join this race,” she said.
The event, which is organised by PSLEM in collaboration with the Ministry of Health and the Malaysian Society of Rheumatology, will also witness the launch of the first edition of the Clinical Practice Guidelines for SLE patients. On the itinerary is a health screening programme organised by UKM’s Faculty of Medicine.
Those who wish to participate can register at http://tiny.cc/ WAP2024 and will be charged RM60 starting from April 29, or can walk in during the event.